On November 12th, 2017, the unimaginable happened to our family. My husband and I tragically lost our healthy, 2 year old daughter, Vienna, suddenly and unexpectedly. She was found unresponsive within 10 minutes of falling asleep on our family room floor. After a thorough investigation, including an autopsy, examination of the death scene, and a review of our child’s and family’s medical history, her death was categorized as Sudden Unexplained Death in Childhood (SUDC). We had never heard of this, nor had any of our friends and family. We soon learned that these tragedies can happen to anyone, without warning. Devastatingly, we learned about SUDC the most difficult way possible; when it happened to us.

SUDC is one of the most under-recognized medical tragedies of our time.

We have now entered our 2nd year that I won't be able to hold her, hear her silly laugh, or see her gorgeous smile. We still can't believe that the worst nightmare of any parent happened to us.

To honor my daughter, it has become my passion to spread awareness of this rarely known category of death and ultimately prevent this tragedy from happening to future families. In order to raise awareness for SUDC world-wide and to fund SUDC research, I am starting my own nonprofit organization. I am reaching out to share my mission and ask for your help in building this nonprofit. Any amount will help raise awareness and support research for SUDC.

We learned on October 2, 2018, through the research study (SUDCRRC- see below for more info), that there were no abnormalities in Vienna's genetics study, that would cause her death.

Time is kids' lives. Every year, around 400 kids (ages 1-18) die without explanation; every year, around 400 families are devastated and try to get through the day. These numbers will grow as more cases are identified (via awareness, education, and research), as these numbers are likely greatly underestimated.

Please share this post to help me get the word out, and feel free to read the lengthy info below Vienna's adorable picture to learn more about my goals, Vienna, and SUDC. I sincerely thank you for your ongoing support. It means so much to my family and our Angel Vienna.

MORE DETAILED INFO:

PROPOSED NONPROFIT ORGANIZATION: TEAM VIENNA 4 SUDC AWARENESS

My vision for “Team VIENNA 4 SUDC Awareness” is ultimately widespread, global awareness and education of SUDC (Sudden Unexplained Death in Childhood), while concurrently, honoring the memory of our healthy, 2 year old daughter, Vienna, and funding SUDC research. Vienna died on November 12, 2017, within 10 minutes of falling asleep on our family room floor. This will be an organization where the supporters, if they choose, can be personally involved in events with Vienna’s family and outreach projects. There are many Vienna projects that have been created, articles that have been written, and awareness events that have occurred since November 2017. However, I would like to further expand all those avenues, and make the Team VIENNA 4 SUDC Awareness footprint a more international phenomena. This is now my life’s mission.

Sudden Unexplained Death in Childhood (SUDC) is a category of death in children/adolescents/teenagers, ages 1-18, that remains unexplained after a thorough investigation, which must include an autopsy, examination of the death scene, and a review of the child’s and family’s medical history.Most often, SUDC occurs in seemingly healthy children during sleep. This unimaginable nightmare impacts around 400 families each year, however it is felt that this number is greatly underestimated. SUDC is believed to be rare; occurring in about one in every 100,000 children. However, it is not known exactly how often SUDC occurs. Because of inconsistencies in death certification practices and because the World Health Organization (WHO) lacks a specific way to record sudden and unexplained deaths in children that have been thoroughly investigated, it is impossible to know how widespread the problem is.

Knowledge of SUDC in the medical community and general public is extremely scarce. While SIDS occurs in infants under 12 months of age, SUDC addresses sudden unexplained deaths of children after their first birthday. At this time, researchers do not know what causes SUDC, how to predict it or how to prevent it.Research is crucial, however no public funding of SUDC research currently exists, despite SUDC being the 5th leading category of death in children ages 1 to 4. The SUDC Registry and Research Collaborative (SUDCRRC), based out of NYU Langone Health under world-renowned researcher and physician, Dr. Orrin Devinsky, is spearheading this effort through private donations.

Awareness and education of SUDC is incredibly important for many reasons. When a sudden unexplained death occurs in a child, the parents are devastated, hopeless, and feel isolated. Children are not supposed to die before their parents, especially if they are healthy. It completely disrupts all logic. The parents have no answers. Nothing makes sense. They feel like they are the only ones. It could take months to years for them to hear about SUDC and learn that there are many other SUDC families and important support services available to them. They could easily blame themselves. Others could blame the parents. With SUDC awareness, important resources can be offered to the parents and family promptly. They can receive the support that they need to survive each day and learn that they are not alone, and that there is a large SUDC family community who is here for them. If the medical examiner/pathologist knows of SUDC, then prompt categorization of SUDC can occur after autopsy (instead of “undetermined” or other). Therefore, research looking into possible causes of the death of their child, may be conducted, if the parents consent. If more people learn about SUDC, funding will follow to allowmore crucial research to occur, then causes can be uncovered, and prevention strategies can be put into place. Maybe then one day other parents won't go through the daily torture of having lost a healthy child for no known reason.

January 19, 2019 would have been Vienna’s 4th birthday. My sweet daughter was a healthy, fun, caring, free-spirited, silly, beautiful 2 year old girl, when she died suddenly and unexpectedly of no known cause. She had a perpetual smile to share, infectious laughter, and was a ray of sunshine to everyone who met her. She loved to pretend to read, sing, explore various fashion choices, help her friends at school, and play with her family. She had a remote history of febrile seizures (known to be benign at this time), but no other known medical problems. Her tragic death was deemed SUDC after the autopsy. Because the medical examiner knew of SUDC, she contacted the SUDC Foundation, who then contacted us within a day and educated us on the medical mystery of SUDC. They asked us if we wanted to enroll Vienna in the SUDCRRC research study at NYU Langone Health, which involved donating her brain, other tissues, and her blood; we immediately said yes.

I have many projects and events in which I am involved currently. In Vienna’s honor, I have created Team Vienna, to help increase SUDC awareness. I have personally bought and distributed well over 30 dozen “Vienna flowers” (roses) with informational cards attached, and over 250 “Vienna books” with informational, memorial stickers inside, to people at all different types of events and places. Friends and family have helped with distribution across the US and the world as well. I have been instrumental in creating a Team Vienna t-shirt of which is being sold as a fundraiser for our mission. These shirts and other Team Vienna gear are being worn at races and other events to raise awareness and start conversations. Vienna flowers, Vienna books and Team Vienna gear have reached across the US and overseas due to all of our efforts. Awareness postcards were developed for a recent race and as a general informational source. I wrote a message to Vienna a few months after she died, and after sending it to her favorite musician, mr. RAY, he created the music, and produced her song, "I Think About You (Song for Vienna)". https://www.youtube.com/watch?v=lLXQzoVV0X8&t=1s Vienna's song lead to the creation of the educational, music CD entitled, “Songs for Vienna”, with the help of mr. RAY. The postcards and CDs are distributed as well to explore other avenues for awareness and education. A new collaboration with designer Lauren Farrell NY has lead to the "Vienna Collection", which are Vienna-inspired handbags. These special bags were designed with love by Lauren, Vienna's big sister, and me (Vienna's mommy, Denise). Proceeds from these sales will be donated to our new nonprofit. www.laurenfarrellny.com

On May 19, 2018, a 5K race at the shore in Sea Bright, NJ, welcomed over 200 Team Vienna supporters on a very rainy and windy morning (please see amazing picture below!). On that same day, dozens more, across the US and spanning 5 other countries, ran/walked/hiked/biked/exercised for Vienna, as Team Vienna, at their location. Pictures from that incredible day were submitted and are posted on the Team Vienna – SUDC Awareness Facebook page. Ultimately, as funds allow, I would like to expand all these locations and be able to support their individual efforts through Team Vienna 4 SUDC Awareness gear packages to distribute among the participants. Also, I would like to initiate contact with medical schools across the US to develop a relationship that would entail first-year medical students receiving a Team Vienna shirt/gear, and being involved with some type of local, active community effort through their school, while learning about SUDC. In August 2018, the USA Men's Junior National Volleyball team proudly wore Team Vienna T-Shirts in Cuba in support of our cause(please see 2nd amazing picture below!).

There is power in numbers. Increased participation of Team Vienna across the US and the world in all different capacities will promote the success of this nonprofit organization and the mission. We are giving Vienna and other SUDC children a voice that they no longer have on this earth. Concurrently, mission success will increase awareness among the medical community and the general public. Therefore, more questions (via SUDC research) will eventually lead to more answers.... and the hope that these tragedies one day will end. This can happen to anyone, at anytime.

My daughter can’t make waves in the ocean for herself anymore. WE need to do it for her.

Thank you again for your ongoing support. It means so much to my family and our Angel Vienna. GO TEAM VIENNA!